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Crohn's Disease Forum » General IBD Discussion » Faecal Calprotectin


06-13-2017, 09:49 AM   #1
Grant
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Faecal Calprotectin

Hi All, not posted for some well. I've been doing reasonably well on Inflectra for about a year albeit still with active rectal crohns.
Sadly over the last 6 weeks or so things have not been so good & after doing some samples I'm now showing Faecal Calprotectin on a scales of about 600. Not high apparently but its giving me bother again. My Specialist Nurse has got me on a 30 day course of Pred. 5mg suppositories which has slowed the bleeding to virtually nothing but I'm having some bad days again.

Whilst here I thought I'd also just tell you about a development here in UK that I'm pretty pissed off about. I used to be able to access my test results online. Finding out how my CRP was doing etc without bothering the Specialist Nurses etc. All been stopped, here in UK they dont want us patients knowing as it leads to us comparing online with others like we do on here. Frankly IMo thats pathetic & leaving people in the dark is dangerous. A baffling state of affairs I feel.
Regards
Grant
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1st symptoms 1983
Diagnosed 1985
1997 Right Hemicolectomy & Resection
2002 Laperotomy & Resection
2010 Laproscopic Ileocolic Resection
2012 Laproscopic Laperotomy & Resection
2013 diagnosed with a Fistula
Been on Azathioprine Pred & Methotrexate
Currently on:
Inflectra
Questran
Loperamide
Calcichew
Pentasa 4gm daily
Daily Multi Vitamins
3mthly B12 Jabs
06-13-2017, 10:13 AM   #2
scottsma
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I'm sorry you're not doing so well Grant,but hopefully the pred.will do the trick.Although 600 is not too high,it does indicate some inflammation,but you know that already.I hadn't heard about the on-line problem.I can see their point somewhat though.My doc.is always amazed at my understanding of my illness.Gone are the days when you walked into the surgery, and accepted a prescription without a murmur and were out in 5 mins.We like to get into a discussion / argument of why,side effects,interaction etc.and they just don't have the time now....Feel better soon.
06-13-2017, 10:48 AM   #3
Sophabulous
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Wow, I never knew you could view your own results online anywhere in the UK! That would make life so much easier. I can currently only find out at appointments because the gastro secretaries can't discuss results over the phone - they won't even give you the figure if you ask for a specific test result.

I understand they don't want to be badgered but at the same time we do have a right to know what's going on. My consultant said she wanted to see me in 2 months after my last appointment. That works out as in 2 weeks time and I haven't even had an appointment sent through yet. Guess I'll have to keep ringing up every day to chase it for 3 weeks like last time. I wouldn't even mind but I'm waiting for a decision as to whether or not I'm going on a biologic as azathioprine has failed.

So frustrating, I totally feel your pain!!
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Diagnosed severe Crohn's of the Duodenum, Terminal Ilium and Cecum.

Currently taking Azathioprine 100mg, Esomeprazole 40mg, B12 Injections and various supplements. Azathioprine failing so awaiting next steps
06-13-2017, 11:27 AM   #4
Grant
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Hi Sophabulous, if you use Patient Access like I do then log in & just go to test results. Used to be very up to date info on blood tests etc. Now cant go back further than March.
Rgds
Grant
06-13-2017, 01:12 PM   #5
Sophabulous
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Hi Sophabulous, if you use Patient Access like I do then log in & just go to test results. Used to be very up to date info on blood tests etc. Now cant go back further than March.

Rgds

Grant


Thank you, I do use that but never stumbled across any test results on the app. Off to explore now!
06-13-2017, 01:16 PM   #6
Sophabulous
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Yep, checked app and desktop version, no test results section for me! Sneaky sneaky ☹️
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